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Leukemia Sucks…..So Does NF-1

Leukemia and NF-1 Can Effect Anyone

On August 29, 2014, my daughter was diagnosed with Leukemia. Her doctor admitted her immediately to UCSD for a 30 day stay. That within the next week, on her 33rd birthday, She began an aggressive week long treatment of chemotherapy, followed by blood transfusions. So far they have been successful, but more treatments will continue through January 2015 requiring her to stay at the hospital once a month until the month for six days each month.

My daughter is the mother of two beautiful girls 5 and 8 years old. Her oldest daughter when she was 6 months old was diagnosed with NF-1, Neurofibromatosis type I.

Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

For 7 1/2 years she and her husband spent every hour of every day, of every week of every month, probing and examining their daughter, searching for any new bump, growth or abnormality. Worrying over a headache or joint pain their daughter may have complained about and making yet another appointment for an MRI. Her mom and I along with our entire family and many friends are very helpful and supportive in helping them and our granddaughter. Now we are helping my daughter too.

It’s unbelievably tough to see what she is putting up with and going through and not be able to do a damn thing. I can’t take the treatment for her, I can’t get sick for her. I can only sit with her through her morning Chemo treatments, while her mom sits with her during her evening treatments. We can drive her to the infusion center for tests and platelet infusions if needed, watch her kids and pick them up from school…..but we can’t make her not hurt. That’s tough.

So today we’re waiting to get the call from the hospital for her to come in for her next round of Chemo. This will be a 6 day stay and then she’ll get to come home. Her blood levels will get screwy, eventually drop to about as low as they can, making her very vulnerable to getting sick. Her bones will hurt terribly, can’t walk and her vision blurry. After a few platelet infusions and a possible blood transfusion, she’ll get her levels back up and then she’ll feel better, much better. This will give her about two weeks hopefully, of felling pretty good. Then she’ll do it again next month and the month after that.

While she is out of the hospital, on Mondays, Wednesdays and Fridays she travels to the Bone Marrow Transplant/Infusion center for blood tests. They see what her levels are and determine if she needs an infusion of platelets or a blood transfusion or hopefully nothing at all.

I have been able to take her to these appointments, where I have met and seen so many others doing the same thing. Fathers with their sons, daughters with their mothers, mothers with their daughters, husbands with wives, wives with husbands, friends with friends and patients by themselves. Many are very sick, others you can’t tell. But each and every one of them become attached in some way. They support each other, celebrate if its found that a treatment is not necessary or blood levels are on the rise. And always encouraging to each other. And this includes the nurses and RN’s, very wonderful people!

I wanted to share this experience and it’s not over yet. I will continue to share and update, it helps me with this whole situation. Others can too please.

Great strides have been and are being made in cures and treatment for both NF, cancer and leukemia. I have seen more these last couple of months than I have for my entire life before. I have never prayed so much in my life, apologized endlessly for things I’ve done wrong and regretted so very much.

I will do things different and have started doing so, although it’s been hard, I might add. But it’s getting easier every day. One thing I am doing that I have never really done before, is to step outside in the early morning, look up and thank God for the beautiful day and allowing me and my family to be part of it.

Yes. Leukemia Sucks…..So Does NF-1

 

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